Tinnitus Retraining Therapy

Jastreboff has stated to STOP using them if adversarial & more or less find a competent professional. In some cases they do not help. Thanks all the same. The audiologist admitted being out of her depth & we decided to part ways until she can better educate herself.

 

Telling someone white noise maskers will reduce if not even cure their pain-hyperacusis can be dangerous advice. Also, you can't know if their pain-hyperacusis won't improve if they don't use WNGs.

Bryan Pollard said on a recent Tinnitus Talk Podcast episode:

• There was a study earlier this year by Martin Pienkowski that was entitled ‘Rationale and Efficacy of Sound Therapies for Tinnitus and Hyperacusis’. In this paper he concluded that there are too few placebo-controlled trials that help to demonstrate the effectiveness of any sound therapy treatment and he highlighted that, especially for hyperacusis, only a handful of studies, mostly case reports, showed true benefit for hyperacusis, broadly speaking.
• In more specific discussions with clinicians, as well as our own survey data, I have found that for those who have hyperacusis with pain, there is some evidence to indicate that they get much less benefit from either Sound Therapy, broadly, or TRT overall, than those who have loudness hyperacusis.
• With pain hyperacusis, earlier this year in talk on treatment for pain hyperacusis, the spokesperson said that we treat pain hyperacusis completely independently now from loudness hyperacusis and it requires a much more tailored approach and, also, we typically don’t expect the same outcomes as we do with loudness hyperacusis.

 

@bobvann

It is important to have a therapist that skilled in tinnitus and hyperacusis as counselling is often required when using WNG.

I do hope you are able to find someone suitable Bob.

Take care
Michael

 

Oh Michael you make me laugh, if it was not for this tinnitus forum then how would people get all your wonderful advice

WARNING!! YOU WILL NOT SEE IMPROVEMENT IN YOUR TINNITUS AFTER READING THIS POST

 

@bobvann
We all have to realise that there is more “CRAP” spoken about tinnitus ‘so called’ treatments than almost any other subject on earth.
Most of these treatments have no real science behind them.
Is anybody actually likely to use a ‘treatment’ for two years that is giving no sign of improvement, just to see if it works?
REALLY??
Particularly one that has been discredited by several other specialists.

We must also remember that in this particular arena there is no such thing as a tinnitus ‘guru.’
Nobody knows as much, let alone more, about your tinnitus than you do.
We have to be our own saviours, by trial and error.
If something ‘feels good’ then do it.
If something ‘feels bad’ then don’t do it.
If coming on to a support site, such as Tinnitus Talk, for companionship and suggestions, helps you feel less lonely, then keep coming here.
It will do you no harm, and may be of great benefit.
Don’t allow anybody to taboo it for you.

Also be wary of authoritative advice.
When somebody tells you that their tinnitus was unbearable, but ‘by this means’ they were cured -
be skeptical.
Despite their claims - their tinnitus may be anything from insignificant to mild or moderate.
Probably not on the scale of yours.
You have absolutely no way of knowing.

We are all searching for ways to alleviate this condition of course - my own aid is a daily session of meditation - but I do not push it as a universal ‘treatment’ - it won’t help everybody - just a suggestion.

Trial and error - and be your own guide.
All just my own ‘two bobs worth.’

Dave x
Jazzer

 

The big question about hyperacusis, still unresolved, of course, is... how do hyperacusis sufferers get used to sound that may be damaging or very bothersome for everyone?

With this I don't mean sounds like dishes clanking or fork on a plate... but like a loud motorbike, the odd noise from a power saw or a jackhammer round the corner... stuff like that. And for that there is no answer.

Habituation to music at home, at 80 dB on a cheap dB meter does not feel like the being around traffic reading 80 dB on the same cheap dB meter. Let alone if we are talking about sounds peaking 100 dB... out there, in real situations, in the real world... and no one has addressed this question successfully yet.

 

You make me laugh too @Star64 and thanks for your kind words.

On a serious note. My advice to keep away from tinnitus forums only pertains to those having or about to start tinnitus treatment. The reason being, it is better to have the mind clear and to be positive and concentrate on other things beside tinnitus and thus, give the treatment time to work. In addition to this, there are some people in tinnitus forums this one included, with a negative bias towards tinnitus treatments and believe them to be ineffective. Some (not all) are quick to challenge a person if they are having TRT or CBT for example and try to convince them these treatments do not work. This happened last week where someone was posting their success so far with TRT. This created a storm of controversy and I also got involved to support TRT for I have had it twice. The person in question has now left the forum because of negative comments.

Nice to chat with you take care.
Michael

 

There is only one problem with tinnitus.
‘Coexistence - and how to achieve it.’

My only suggestion is - experimentation.

Read up on TRT - CBT - WNGs - Meditation,
and keep an open mind.
If a course of action ‘feels’ right - keep going,
if not, then do not be persuaded that you are being negative by rejecting it.

Leave any idea of ‘negativity’ to those who are obsessive about using it.

Unfortunately we are stuck in a scenario where there are no credible specialists - nobody has the answer.

‘If it feels right - it is right.’

 

Absolutely. Hey I was able to school an audiologist who has chosen to further her education. I do have my better health plan so I am not out of options. She stated she would contact me after taking some courses but who knows how long that will be. She has the potential to make a great therapist due to her humility IMO.

 

For sure especially when such advise differs from the person who has actually created the program & other professionals. The correspondence I had with Pawel Jastreboff was formatted into a Q&A in this thread for everyone to read. This is coming from him, not something I am blowing out this out of my @ss.

I am a big boy & fully capable of making up my own mind.

I have tried WNG's on a few occasions and it is a bust.

What do they call the theory of trying something over and over again expecting different results?

Having said that I would be willing to work with that nice young Audiologist again because she is the only one I actually trust. The fact she recognized she was in over her head for the time being & is willing to go further educate herself speaks volumes.

I deal with things through humor (just look at all the silly thing I post in the OT threads)

It definitely helps with keeping spirits up and it's good ol fashion fun!

 

I agree with you all the way Bob.
Certainly - if we lose our sense of humour we are stuffed.
With regard to Tinnitus treatments, and life in general, I am a skeptic.
I question everything.

One thing I know for certain:
noise - excessive volume of sound - has been our enemy.
I do not agree with any ‘therapy’ that promotes further noise, while stimulating nerve cells.
I wouldn’t touch Neuromod with a barge pole - even as a gift with free flight tickets.
(I spoke to their rep. on the stall at the Tinnitus expo in Birmingham two years ago.
It looked like complete guesswork to me, with dubious science, if any, behind it.)
I will not use hearing aids, for the same reason that I will not use headphones.
Why amplify any sound coming in?
Similarly, my feeling about WNGs is that they are counter productive.
More noise - with an added extra tone thrown in.
Yes - I’ve read all of the arguments for them - and personally I don’t believe a word if it.
Now working with the nice young audiologist sounds like a great idea Bob.
(.......er.....was she a ‘looker?’.....just wondered.)

Dave x

 

I do remember you saying that about using any sound therapy. I agree from what I am seeing for Lenire.

At around 6 to 10 grand possibly more for the "privilege."

Charlatans are alive and well in the 21st century!

This clinic I 1st went to https://soundidears.com/what-we-do/tinnitus/

With whom was supposed to be one of the more knowledgeable practitioners back in 2018.

Here is what Jastreboff had to say in regards to her approach.

Pawel Jastreboff: I AM NOT RECOMMENDING USING WH AND CHIMES IN TRT

 

I have a question about the JAMA TRT report.

It states:

source: https://jamanetwork.com/journals/jamaotolaryngology/article-abstract/2734346


My question is, when it refers to the "standard of care," what exactly does that mean?

For example, in this sentence:

"Tinnitus retraining therapy with conventional sound generators is no better than tinnitus retraining therapy with placebo generators or standard of care."

What exactly is "standard of care?"

Also, what is the difference between a conventional sound generator and a "placebo generator."

If you happen to know the answers, thanks in advance!

 

With many ENT's here, this could be summarized to "Learn to live with it"... but I don't know if that equals the article's view.

 

My guess is that standard of care refers to the Clinical Practice Guidelines for Tinnitus published by the American Academy of Otolaryngology. In the United States these guidelines are considered the standard practice that ENTs should follow for evaluation and treatment of tinnitus.

The document is rather long, but for a summary, see the Flowchart on Page S9.

https://journals.sagepub.com/doi/pdf/10.1177/0194599814545325

 

Well, this explains a lot. Not a single mention of possible tinnitus causes non-hearing related. Had I followed the first advice I was given (just live with it), I'd still be stuck with screaming menaces inside my head and unnoticed neck issues.

With the broad range of causes going around, you'd think an ENT would at least ask if there was some kind of physical trauma recently... I wouldn't expect him to treat it (not their field of expertise), but a mention of other possibilities than just the ears could help some patients massively.

 

I'm a flag waver, the white flag I give up

 

20 years ago TRT had criticisms.

 

TRT and other forms of tinnitus treatment, will always be criticised by negative thinking people of which there are many in this forum. Mainly because they want a cure for the condition and nothing else will be acceptable. They moan and groan with likeminded people, blaming their government and medical professionals for their plight in life. This gives them kinship and true sense of concord, knowing they are continuing the fight to keep negativity alive. I am referring to those that denounce tinnitus treatments and have no wish to try them, and not people that have difficulty coping with tinnitus or expressing how it makes them feel.

Michael

 

This was in the year 2000 before most normal people used the internet. The criticisms were probably coming from independent medical professionals.

 

Indeed: Medical professionals that have never experienced tinnitus and therefore know nothing about it. They are physicians not tinnitus experts. TRT, CBT etc are treatments for tinnitus not cures. They help a person to habituate to the condition and they are currently the best treatments available. Which can include: Counselling, white noise generators, relaxation therapy, Mindfullness, medication. The alternative is to bleat, moan and groan all day and continue to perpetuate the negative mindset.

Michael

 

So people like Pawel Jastreboff?

Except that these treatments don't work for everyone, oftentimes rely on false misconceptions and generalizations and Pawel Jastreboff himself said that TRT works for everyone except negative people or people who are taking benzodiazepines showing a clear bias in his ability to judge TRT.

Except that you also get to decide who's positive, negative, actually trying to cope well or a real severe sufferer.

Continuously painting all criticism of TRT as negativity and an unwillingness to help oneself just further proves your blind devotion to Jastreboff and TRT.

 

Are people who are not satisfied with the lack of available treatments for COVID-19 just being negative?

Are pink ribbons worn to support a cure for breast cancer badges of negativity?

Were people suffering from AIDS whose loud complaints successfully mobilized public sentiment, funding, and the medical community to develop effective treatments simply being negative?

Indeed, isn't the history of medical innovation driven by patients and their loved ones who are able to mobilize public sentiment, funding, and medical research, rather than simply accept whatever condition is comprising their quality of life?

 

If you had shown manners and been more respectful towards me in your post, then I would take time to explain a few things to you that would possibly help for you have had tinnitus for a very short time. As it is, you are angry discontent and things do not have to be this way. Continue on your path by engaging with the negative thinking people in this forum and you'll get absolutely nowhere.

Gooday and I wish you well
Michael

 

Please forgive me if I gave you that impression. I certainly didn't mean it - at all.

If we were discussing this civilly in person, and I assumed we were discussing this civilly here, I would ask these same questions in the same way, and perhaps this format gave you the wrong impression. I'm not asking out of anger, I'm asking out of curiosity.

Respectfully, when you compare other health conditions in which striving for cures is viewed as a positive thing, why would those same efforts be viewed as negative when they relate to tinnitus?

 

there are no experts yet. Just adults who pretend to be experts.

 

I accept your apology. I have corresponded with you quite a few times since you joined this forum but did not realize this at first, because you have changed your Avatar. Your posts were always respectful and I was surprised to see this change. Please do not adopt the policy and attitude of some members in this forum. Those that are discourteous towards me, I do not reply to their posts or I place them on ignore so I never see their posts again.

I sent you links to articles that I have written and advised you to read them. I hope you have and will paste them below. Your tinnitus is noise induced and this type of tinnitus, usually improves with time as I've previously mentioned to you. However, if you engage with negative thinking people, that regard tinnitus as a problem that affects person's quality of life long term, then their beliefs can soon become yours and prevent you from habituating. There is nothing wrong in wanting and seeking a cure for tinnitus. If you read my post again, I was specifically referring to people that denounce treatments for tinnitus and believe them to be ineffective. This is negative thinking and can do a lot of harm.

Tinnitus is just one in a long list of medical conditions that at the moment there is no cure. However, like other conditions it can often be successfully treated and many people have a good quality of life, doing everything that they want to within reason. If you harper on about a cure for tinnitus; with this type of mindset treatments that I have mentioned will not be of much help, because you will have conditioned your mind to accept nothing less than a cure and you could be setting yourself up for a life of misery and things don't have to be this way. Noise induced tinnitus often improves with time. Providing you keep away from headphones and not subject your hearing to overly loud sounds, then the future looks promising.

All the best
Michael

https://www.tinnitustalk.com/threads/new-to-tinnitus-what-to-do.12558/
https://www.tinnitustalk.com/threads/tinnitus-a-personal-view.18668/
https://www.tinnitustalk.com/threads/hyperacusis-as-i-see-it.19174/
https://www.tinnitustalk.com/threads/acquiring-a-positive-mindset.23969/
https://www.tinnitustalk.com/threads/tinnitus-and-the-negative-mindset.23705/
https://www.tinnitustalk.com/threads/the-habituation-process.20767/
https://www.tinnitustalk.com/threads/is-positivity-important.23150/
https://www.tinnitustalk.com/threads/the-complexities-of-tinnitus-and-hyperacusis.25733/

 

I do not regard myself as a tinnitus expert nor is it my intention to pretend I am. I have many years experience with Noise induced tinnitus, counselling and corresponding with people with this type of tinnitus, because that is what I am familiar with.

Michael

 

I wonder if the person who

• Signs every message with a million hyperlinks about their own opinions and insists that you read them
• Had success with TRT and feels the need to motivate others to believe it at all costs
• Tells people they are doing it wrong or not believing enough if the treatment isn't working
• Insists on messaging him for counseling

thinks he's an expert. To be fair, if there was an expert and TRT was the solution, I would be overjoyed if they did all of the things above. It's okay if you think you're an expert; there are valuable things you know (sincerely, like avoiding headphones). But you certainly can't claim you don't act like you are one.